Ryan's First Week Back to Daycare (and Work, for Mom); Serious Reflections; Andrea and Kevin

The good news is that Ryan's transition back to daycare has been excellent.  Every day the teachers report he has had a great day, that he's been happy, and that he's eating and sleeping well.  Admittedly, I thought Ryan would be a little sad or unsettled by the change.  Apparently, he's loving being back at his regular daycare.  In fact, most days when I go in to bring him home, he starts to cry!  Jeez, that makes me feel great (sarcasm!). 

The first day I went to pick him up, he was snuggling with one of the teachers who was folding laundry on the carpet.  Another day, he was playing in his new favourite centre, with plastic flower pots, flowers, and real potting soil.  Another day, he was stretched out on a little couch, relaxing with a bottle.   They report he enjoys outside time, too, either running around or rocking back and forth on a ride-on toy.  They say he's doing well with feeding himself with the spoon, although it's very messy!  They are trying to teach him to drink from a sippy cup with a straw.  So far they haven't had luck, but are determined to keep trying.  I think they could do this, because Ryan likes straws (well, chewing on them), but he also knows the sucking action from the bottle. They also approve of his "chewelry," and have even asked for a spare one in case we forget to put one on him one morning.  Apparently, he has taken to going up and "munching on his teachers"; not in an angry/hurtful way, but he will go up to them and start chewing on their clothes! (He has done this to me and Andrea recently, too.) So, they find redirecting him to his "chewelry" works well.

Generally, things are going incredibly well.  There are a few little things the staff is wondering about, like Ryan has woken up twice during nap this week, really crying hard, but all they have to do is pat his back, and he goes back to sleep. Nightmares?  Also, Ryan is not signing for them.  Or, if he does, he seems to be getting them confused. They say he often pats his head,  but this was an imitation, and not meant to be a sign. I've seen this at home, too. "Pat head" has suddenly become Ryan's catch-all sign for when he wants to communicate something (although, like I said, it's not really a sign).  I have even seen him "pat head" when I wave bye-bye to him, and no one is there to prompt him. Hmm.

Anyway, I think Andrea put it quite well when she said, "I think Ryan likes this daycare better than his new school [SC] because they don't make him work so hard!"  It appears to be true. I'm glad Ryan's had such a happy transition back to daycare, but I'm conflicted because I know he needs to continue intensive therapy.

And I just don't have the time to provide it.

Thankfully, my transition back to work has been really smooth, too. I have two nice groups of students, and the staff and my former students have given me an incredibly warm welcome back.  However, I find I am exhausted and headachy at the end of each day. Then, by the time I pick up the kids, get them home, clean up the house, feed them, do homework with Andrea, and do anything I need to prepare for work the next day,  I am utterly drained.  I might have a few minutes to run through one quick program with Ryan, but he is resistant, and I don't have the energy to force the issue. 

Ryan is still using signs at home, which is good. "More" is still going well. We are still working on "milk." The problem with "milk" is he has become prompt-dependent, and I'm not sure how to break it.  I hold out the bottle to show him, and he immediately hold out his right hand to me, expecting me to HOH the "milk" sign.  When I hold back and wait for him to do it himself, he will either switch to "more," pat his head, or just get mad and grab at the bottle.  We're at a bit of an impasse on this one.

Soon we'll be back to working with our other agencies. I've received messages from Children First saying we'll be in contact in early May, so Ryan's OT (Occupational Therapy), PT (Physiotherapy), and Speech Therapy can be started up again.   On Thursday, Ryan will be going for his eligibility assessment for the IBI program through Thames Valley Children's Centre.  It's going to get very busy working with all these agencies again, plus staying in contact with Summit Centre, although I know they are all there to help Ryan.

Mixed Feelings

I have been reading a new book called Carly's Voice. It is a painfully honest record of a family's journey to help their non-verbal, autistic daughter find her "voice." I am only about a third of the way through, and Carly's autism appears much more severe than Ryan's,  but there is so much I can totally relate to in what they have experienced and in the emotions her father expresses.

The one thing that sticks out to me is how much that family has been able to do for their daughter (not without sacrifice and debt, but still . . .).  The mom's full-time job is advocating for and doing therapy with her daughter.  In an ideal world, that's what I've imagined myself doing for Ryan. The best scenario would be me at home with Ryan, focusing on his appointments and therapists and therapies and planning for the best possible transition to kindergarten in September 2014.  Carly's family has a dedicated ABA team and speech and physiotherapists for her, as well as the equivalent of her own, private Educational Assistant who sticks with her, during and after school.  Like I said, it's not that they haven't had to fight to make things work the way they want and sacrifice greatly to cover the financial costs.  But even just the ability to be there for Ryan, every day, participating in intensive therapy, would be so beneficial. I know, because that's what we did for the past three months!

Then again, Carly's father also points out that Carly's life is much different from her siblings.  While they are out playing with friends and being involved in recreational activities, Carly's life is focused on ABA: therapy, therapy, therapy.  Is she having fun?  I totally related to this when I saw Ryan's reaction about returning to his old daycare.  He is so happy there. He is clearly having fun and enjoying himself way more than he did at Summit Centre.  Is it worth the price? 

For Carly, it has been. I haven't finished reading the book, but I've seen the outcome of her story on video. She is actually a highly intelligent, witty young lady who is trapped in her body, but has learned to communicate by typing on the computer.  I'd like to find a balance for Ryan, between the ABA therapy and structure he needs, and ensuring he still gets to have a joyful childhood.

I just want to clarify that it's not this one book that brought out all these thoughts and feelings in me. It's that they were already there, and I was amazed how powerfully this book reflected things I've been agonizing over for more than a year now.

Signing versus PECS

I've been reading some articles lately that make me doubt my decision that sign language is the best way to go with Ryan.  Furthermore, seeing how Ryan is struggling to learn more signs than "more" is getting discouraging.  Ryan has also been starting to do more babbling lately. It's not coherent; the only clear one is "Mum-mum-mum," which I've heard rarely since he was about 10 months old.  But he has been making more sounds: meh, ga, s, h, wa, da, th, buh, etc. pop out once in a while.  Like I did with Andrea and Kevin when they were little, I acknowledge any speech-like sound and make a big deal out of it.

What I've been reading suggests non-verbal autistics have more success with PECS (Picture Exchange Communication System) when it comes to eventually learning some spoken words. I had vetoed PECS because Ryan tried to eat the pictures, just didn't seem to connect them to words/meaning, and wasn't attentive to them.  Now that Ryan's attentiveness is growing, maybe we should give PECS another try. I know the Speech Therapist at Children First was interested in pursuing PECS before we started Unity.  And I know a lot of the STEPS kids at SC use PECS, even when they start to become verbal.

However, the latest research also shows that there may be even better ways to get non-verbal children to speak, based on an integration of motor skills/the motor skills-controlling parts of the brain.  It makes sense to me, since producing speech involves many complex muscle movements.

Here's a link to one of the articles about new studies regarding non-verbal autistic children, and the search for new and better ways to augment their communication: "New Hope for Autistic Children Who Never Learn to Speak."

Kevin and Andrea

I'm feeling a little mom-guilt here because the focus all seems to be on Ryan.  Well, he is the child with the most complex needs.  But yes, I do have a lively seven-year-old daughter and a complex, high-functioning autistic 5-year-old-son.

Andrea is doing well. She seems to be controlling her stress levels in the classroom better, and has been having many "I didn't cry at school today!" days. The girls in her class are soon going to be participating in a special program focusing on friendship, self-esteem, healthy expression of emotions, etc. I think that will be perfect for her.

Kevin has been struggling a bit with school. He has his ups and downs. Lately, he just doesn't want to go to school. He says it's boring and he wants to stay home.  However, I think he's too smart for his own good.  One day, his ECE had this story when we picked him up from school: Kevin was being very disruptive during circle time.  He kept making loud noises, despite the teachers' repeated reminders for him to sit nicely.  Finally, she removed him from the group and had a talk with him about why he was acting this way. He calmly informed her, "I'm being bad so you will send me home.  If I be REALLY bad, you'll have to send me home." (!) The ECE kindly explained that they want Kevin in the classroom, and his friends and teachers would miss him if he went home.  She also reminded him of all the fun things they do at school.  After their talk, he had a better day. Oh, my Kevin!

Speaking of high-functioning autism, the SC posted a story on their Facebook page written by a student at St. Clair College's journalism program. The student has Asperger's Syndrome (which I personally think is Kevin's true diagnosis). I wanted to share the story here because it is about World Autism Awareness day, but especially because it shows how wide a range there is on the autism spectrum.  The young man who wrote this is certainly high-functioning and has a bright future ahead of him: "Windsor celebrates World Autism Day."